Forms and documentation

Uniform Data Set (UDS)

The Uniform Data Set version 4 is now available for use at the ADRCs. The UDS contains longitudinal data, collected since 2005 during standardized annual evaluations conducted at the NIA-funded Alzheimer’s Disease Research Centers (ADRCs) across the country. Participants in the study represent the entire Clinical Core enrollment of the ADRCs, with cognitive status ranging from demented to mild cognitive impairment to cognitively normal. A subset of UDS participants are also evaluated with one of the additional sets of diagnosis-specific data-collection forms, the FTLD Module or the LBD Module.
For clinicians planning to administer the UDS, training materials are available.

For additional information on the development of UDSv4, see the UDSv4 Updates Page.

This overview of NACC data outlines UDS study population, collection methodology, and up-to-date participant statistics.

To use NACC forms in research outside of the ADRC program, please submit a Permission Request.

UDSv4 forms are currently only available in English. Please check back for Spanish and Chinese versions coming soon!

Essential documents

The Researchers Data Dictionary for the UDS is intended as the first and primary resource for those analyzing NACC clinical and demographic data. Updates to the RDD for UDSv4 are coming soon. See also this overview of the data available at NACC.

	Initial Visit (IVP)	Follow-up Visit (FVP)
Forms Packet, English The full packet, containing all data collection forms in English. Alternatively, individual forms can be downloaded below.		In Development
Forms Packet, Spanish The full packet, containing all data collection forms in Spanish.	In Development	In Development
Forms Packet, Mandarin The full packet, containing all data collection forms in Mandarin.	In Development	In Development
Forms Packet, Cantonese The full packet, containing all data collection forms in Cantonese.	In Development	In Development
Coding Guidebook The guidebooks provide detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references.
Best Practices for Reporting Biomarkers
Data Element Dictionary In a compact format, the DEDs list all the variables and provide a detailed description, including data type, allowable codes, and information on skip patterns.
Guidance for UDS Submission Form packet checklist

Individual forms

	Initial Visit (IVP)	Follow-up Visit (FVP)

A1: Participant Demographics		In development
A1a: Social Determinants of Health Optional Form		In development
A2: Co-participant Demographics		In development
A3: Participant Family History		In development
A4: Participant Medications		In development
A4a: ADRD-Specific Treatments		In development
A5/D2: Participant Health History/Clinician-assessed Medical Conditions		In development
B1: Evaluation Form - Vital Signs and Anthropometrics		In development
B3: Unified Parkinson's Disease Rating Scale (UPDRS) - Motor Exam		In development
B4: CDR® Dementia Staging Instrument Plus NACC FTLD Behavior & Language Domains (CDR® Plus NACC FTLD)		In development
B5: Behavioral Assessment - Neuropsychiatric Inventory Questionnaire (NPI-Q)		In development
B6: Behavioral Assessment - Geriatric Depression Scale (GDS)		In development
B7: Functional Assessment - NACC Functional Assessment Scale (FAS)		In development
B8: Evaluation Form - Neurological Examination Findings		In development
B9: Clinician Judgment of Symptoms		In development
C2: Neuropsychological Battery Scores		In development

Instructions for the Neuropsychological Battery (C2) Worksheets CERAD Flip Book MiNT Stimuli NOTE: Access to C2/C2T documentation is granted with an approved data request. For data requests approved after 2/7/2025, please reference the email entitled 'Data Request Number XXXXX from NACC' for the password. Please contact NACC at consnacc@uw.edu if you have a previously approved data request and need access to the C2/C2T documentation.
C2T: Neuropsychological Battery Scores for T-cog		In development

Instructions for the T-Cog Neuropsychological Battery (C2T) Worksheets
D1a: Clinical Syndrome		In development
D1b: Etiological Diagnosis and Biomarker Support		In development